June 5, 2009 at 4:59 pm Leave a comment

Last night we had a PKD Meeting and someone from our group who has PKD and is also an insurance agent spoke to us about insurance issues. Did you know that people with PKD who apply for life insurance are considered “substandard” as far as policy terms. You are considered “premium” if you are “healthy” and then it goes down from there. Isn’t that great that Max and Gabe are considered “substandard” as far as life insurance policies go??

What is frustrating to me is I’ve had 2 people lately tell me their doctors told them to go get tested for ADPKD because they are not sure if their children have ARPKD or ADPKD. But neither of these doctors thought to ask their patients if they had health or life insurance and neither one does. I had to stress to both of them before getting a diagnosis for themselves they really should get their insurance in order.

And I could say the say thing about us. When we asked our doctor about having Max and Nate diagnosed after Gabe was diagnosed with ARPKD he said we didn’t need to because they were symptom free but he said nothing to us about getting them a life insurance policy. It could be considered taboo to get a child a life insurance policy but I wish someone had told us that. People had talked to us about health insurance but no one mentioned life insurance. The thing is you can buy your child a type of policy that will increase when they are 18 without having to have a medical test done. And even if it is only $25,000 or $50,000 at least it’s something. Max and Gabe will never be able to apply for life insurance. Their only hope is to work for a big company who offers life insurance to all of their employees. G-d forbid anything should ever happen to them but these are things you need to plan for in your life.

Sitting around the meeting last night I felt sad. Sad that I was in a room full of people who either have PKD or have a family member with it. Sad that so many people have to suffer from PKD. And mostly sad for my boys that this is their diagnosis and that besides having to deal with the illness itself they will also always have to think about it and worry about how it will affect other aspects of their lives, such as health insurance and life insurance (among so many other things).


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therapy Over rated

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